About Me

Twenty-five years ago, I was a long-distance runner, low handicap golfer, avid outdoorsman and a partner in an advertising agency. Today I can neither walk nor stand and must rely on a wheelchair during the day and a hospital bed at night. I cannot sit up in bed nor can I roll over. My fingers don’t flex (I’ll be using voice recognition to write).

This does not make me unique. Many people find themselves in such a situation following a traumatic injury or stroke. But my disability developed slowly and silently. It began in 1985 when I would stumble on runs, lose the golf club midswing, and struggle to rise with a backpack. I didn’t know it at the time, but I was developing the symptoms of a very rare muscular disease called Inclusion Body Myositis. This illness causes one to lose about 5% of remaining muscle strength each year.

Over this long slow decline, I have had to meet new challenges as each capability fades away. The tools I have developed, the equipment I have used, and the lessons I have learned about enjoying life despite physical limits, are what I hope to share with you, the reader, as this blog progresses.

Thank you Dagmar. I’m a little late to the party – you’ve been sharing your story on your website for several years. The advantage to this blogsite is that I can update it frequently – several times a week if needed – and it serves almost like a forum with the comments section.
Mike

I am impressed that you are taking on another significant project. I can’t wait to see the sections as you add content. I had already planned to give you a call when Joyce and I return to SD next month, so I am looking forward to talking about this as well.

Thanks for your post. Comments like yours are what will encourage me to keep writing, remembering and sharing. Good luck to you on your new journey. As you go along, I believe you will find it to be less difficult than you imagine. It also helps to keep in touch with the wider IBM community.

We were so fortunate to visit San Diego a few years ago before the diagnosis of IBM came for Bob. We had a pity party for awhile then decided we better enjoy every moment we can. Thus started a crafting business to fund our travels. Mostly Christmas wreaths but now Bob has begun making willow chairs. We live on acreage in beautiful Wisconsin and have access to the supplies we need. Adversity is the mother of invention. Love your site…will visit often to see what you two are up to.

Hi Mike, I’ve known about your site through the Discussion Board but today was the 1st time I really let myself read and take in your site. You have done a great job and service to all of us with IBM. It certainly does change our lives. I’ve been on disability for 2.5 years now. Certainly not what I expected to be doing at this stage of my life. I’ve slowly been making modifications to our ranch townhouse and hope to be able to stay here for a long time. It can get frustrating at times and quite expensive. I can still use my rollator in the house but have a power chair with an elevating seat for outside. I can still drive and purchased a used van and had a 6-way driver’s seat installed. Grandkids love going riding with me because they get to use the ramp. It’s unbelievable that both you and your wife have these diseases. At least you both really get and understand what the other is going through. Thank you for such a great and inspirational site.

Thank you Kathy, I really appreciate hearing from you. You are certainly right that IBM changes everything. Sort of ironic isn’t it – we spend the money that we might have been saving for vacations, fishing lodges, etc., on home modifications and vans, but then we’re no longer able to do most of those other things anyway so I guess it balances out.

Hi Mike, I have seen your blog mentioned the few short weeks I’ve been on the Myositis discussion board and I am thrilled that I finally made it here. Your outlook, experiences and practical information is worthy of a pot of gold. Yeah, well unfortunately I’m fresh out of those. My husband and I certainly could not have imagined that our lives were going to take this sort of a turn. Thank you for your insight and tips. They are indeed priceless.
MaryAnne

Mike, Thank you for your “site”. My wife and I love that picture of you and your wife on the beach, holding hands. You are an inspiration and motivator. Viewing your site also helps us understand and cope with the coming challenges. This is the first year that I could no longer take care of my own yard and garden. In fact, we planted no garden this year. Good neighbors are wonderful blessings. We have always tried to be good neighbors with no expectation of return. Yet, more and more we see the value of being good neighbors, always. For years we have been active in charity work–Church, Boy Scouts, Civil Air Patrol, Food Banks, etc. It has been difficult to learn to say “no” without explaining. Recently I have been giving my personalized Myositis Association business cards with descibe IBM on the back. May God bless you all, Art (PM dx 2005; IBM dx 2010)

My husband was diagnosed with IBM 10 years ago. We thought we had a plan – hah! Unlike you, we have been reactive rather than proactive and find ourselves spending to renovate a condo that we moved into 9 years ago. We now are in the situation that we have to do a major remodel in order to provide for Dave’s progression. Your site is one that I have found very helpful and given me hope that I can aid Dave and that he is not unique in the progression of this disease. We have had OT and PT come to the house several times, yet they have not even mentioned some of the things that are available. We didn’t know, for instance, that there were such things as power lifts for toilets! We have a hoyer lift, but no sling that works, and the PT’s that were helping as much as threw up their hands and left us with no sling because Dave was uncomfortable and afraid of falling when the PT’s tried the Hoyer on him.
The MDA that we have been to suggested leg braces which wouldn’t work, stick-on grab bars which don’t work, and have had no suggestions about toileting. Dave was measured for a Motorized chair manufactured by Invacare, but our insurance paid for that. We purchased a Chrysler minivan with a Bruno lift in the back, but Dave can no longer get in and out of the van, necessitating the rental of a full-size van with a raised top whenever he needs to go to an appointment. We have figured out many improvisations on our own, raising our bed 8″, raising the lift chair 4″, using the rollator to steady Dave while he transfers from MC to bed and to the lift chair.
It has been a frightening journey for both of us. We have so much more to learn about coping with IBM, and we need to become more proactive rather than reactive.
Thank you for all the tips in your site
Emily

Emily, we were also living in a condo when my disability grew worse and we discovered that my wife had myotonic dystrophy and was going to be using a wheelchair from then on. Rather than go through the expense of the remodel, we simply sold and moved to a slightly less expensive neighborhood where we could get the one-story home that was already wheelchair friendly.

About the lift sling, have you watched my video on that subject? I have a Waverley Glen hygiene sling and it is very comfortable and I feel quite secure when I am in it.

As you point out, we have to be proactive with this illness. The medical profession simply doesn’t know enough about it to be much help.

My friend and I have developed a harness that I’m pretty sure will help Dave transfer from place to place safely. I’ve been battling IBM for 15+ years and know all to well what you’ve been going through. My e-mail address is wahoo7235@cox.net Send me an e-mail and I’ll send you a video of me getting in and out of my harness.

Based on your description of Dave’s struggles, I feel that it is time to have a ceiling track installed. If possible, it should run from above the bed directly to the toilet.

I have a new invention called the Walk Again Overhead, Support System to aid those with ambulatory disabilities, in walking. This mechanism attaches to ceilings supporting a lift motor to allow a person to be lifted up and held in place to enable that person to then walk around their home or wherever. One must have some strength in ones legs and feet to fully use this system. It does not work well for those who are paraplegic or quadriplegic.

It took me 17 years and 8 months to get my first, fully-functioning prototype done. I will come to you and show you pictures and a video of me using this support system, though I am not one with a disability. Please call my Cell # 760.520.5199 Thanks, Don Dyson.

Hello,
My name is Karen, I am writing on behalf of Ability Lifting Solutions, a company that designs, manufactures and installs wheelchair and platform lifts for commercial and domestic use. I am managing online projects for the website http://www.abilitylifting.co.uk/ and am looking for partnership opportunities.
I have found your website http://lifedisabled.com/ which is a valuable resource as it provides information and support for the less able people, their families and carers. Accessibility issues are a big challenge for those who have mobility problems and unfortunately nowadays people with disabilities are still significantly less likely to participate in social activities or attend various events, according to the Office for Disability Issues, HM Government.
Ability Lifting Solutions are dedicated to the work they do and are proud to be able to help many people enjoy better day to day experiences. The company has over 30 years of experience in the industry and work with accordance to the Equality Act 2010 (UK).
I believe your website visitors would benefit from learning about our services and therefore would like to discuss my business proposal to you. If you are interested to hear my ideas please contact me at your earliest convenience.
Kind regards,
Karen Patel

Hello. Where would I go to get notification of your blog and article updates? Facebook seems like the best place but I don’t see it.

I have a family member who is paralyzed from a hit&run accident (she was the pedestrian) and her daughter is basically wanting to give up school to stay with her mom because insurance says that they will no longer pay for her hospital stay. Any advice on what we can do to keep the daughter in school? We are from California and tight on money (obviously because of the hospital bills and future debt this will bring). Much appreciated. Thank you!

ive enjoyed reading all the comments posted and about your struggles with this very challenging illness. I was diagnosed with IBM in 1999. looking back I probably had the illness much earlier. At least five years earlier, I began experiencing weakness in my legs making it a bit difficult going up the stairs and also lifting objects overhead was getting harder.So I guess I could say that I have lived with the illness for about 18 years. At the present , I am in a wheel chair doing limited standing and I need assistance with bathing, getting in and out of bed,and now , opening doors!! I applaud what you are doing. Dont you get tired?that is one of my biggest problems. just writting this tires me! I wish they had a drug for energy! good luck in your new surroundings and thank you.

…. love your blog….soooo inspiring…Hows it going these days….your watercolours are wonderful, its my thing but not terribly good but love the medium…
I have ME and Fibromyalgia and have been ill for 23 years following a flu vaccine, not in the same way as you are but my bed is the place i spend most of my time and where i go from and too, out of necissity. Have found my spiritual life an absolute wonder….and have lots of time to study and practice, which i do….
Would like to ask you what you thought of the jazzy 1103 lift raiser chair as thinking of purchasing one….
I live in the UK, Dorchester, Dorset actually on the Prince Charles wonderful Village development, Poundbury, if your interested in googling it and having a look see….its an interesting place and the ethos behind it….think people either love it or hate it…..I love it, only moved here from living in the country last october and am so gratefull to have amenieties around me, not to mention friends and family much closer….. only renting as not terribly well off but am fortunate to live in such a beautiful part of the UK and do get assistance, so….its as it is.
Wish both you and your wife all the very best and thank you once again for wonderful blog and inspiration…..
ps….love the song, will forward it to a wonderful friend who may also get inspiration from you and your positive outlook…If your anything like me, positivity does have to be worked on as life can be pretty tough when faced with all the challenges…..

Just noticed I failed to answer your question about the Jazzy 1103. My wife had hers for more than 5 years and it was generally quite dependable. Great maneuverability, but battery capacity was just so-so, especially compared to my Permobil C500. (Of course there is a $25,000 price difference!
Thanks for such great feedback. I Googled Poundbury and could only wish we had something so forward-looking here. Southern California has been carelessly developed so that stores, banks, medical facilities are many miles away and there is almost no public transportation.

Thank you Mike for your website. My husband starting caring for a man with IBM about a month ago. The man still lives in his own home but needs 24 hour care. Currently, my husband is one of three people who attend to his daily needs. As far as a know, he does not leave his bed. With my husband’s assistance he is able to sit up. He does have a scooter in the house, but has never used it in during my husband’s care. My husband basically is there for whatever he needs: cooking, sitting up, help with hygiene… what type of recommendations would you give to a caregiver of a person with IBM. I know my husband wants to help him as much as he can. I know the gentleman was diagnosed in the late 1990’s and in probably now in is late 50’s/early 60’s. Any advice you could give is appreciated.

It sounds as though the person your husband is caring for is at about the same stage of the disease as I am. The main difference is that I use a power wheelchair so that I can get around outdoors and enjoy myself. I think it is very important to have more visual stimulation then you can find just lying in bed. This disease can be very frustrating and lead to depression so it is important to stay interested in life.

As far as the kind of help your husband can provide, there are a great many ways he could be useful. Helping the gentleman keep his limbs flexible through range of motion exercises and making sure that he is not developing any sores on the skin from constantly being in bed are important. Good nutrition with fresh vegetables and fruits and avoiding frozen dinners is also good.

But above all I would see if your husband can encourage them to either use his scooter or, if he is now two weak to do that safely, have his physician order an evaluation for obtaining a powered wheelchair.

Hello Mike
I greatly appreciate your blog. November 2008 I was diagnosed with ALS three years later they decided I had IBM. So your blog is a great source of information and help. I still walk with a walker in the house. I use a power hair outside the house. I still use my hands but they are weak. It is so helpful to learn about IBM progression. Such infoation is lacking else where. Thanks much. Keep posting.
Jim

My father was diagnosed with IBM about 5 years ago. It’s the hardest thing our family has ever had to go through watching my father get weaker and weaker. It’s next to impossible to find any doctors that know anything about the disease, and the doctor he has seems more happy to just feed him drugs to try to “help” him. About a year ago he developed a bedsore on his back and we can’t get rid of it. It has gotten infected and he has been in and out of the hospital. As you know, its hard for him being in the hospital. My mom quit her job to help care for my father. Also, when my father was 19 he was in a motorcycle accident that took his left leg. This makes trying to walk all the more hard for him. It makes me feel better reading your story and knowing that we are not alone in going through this. Thank you so much for creating this website and sharing your story.

Hi there. I have just discovered your outstanding webpage. I have run an IBM webpage for some years now. Ironically, I have a picture of your legs on my site. I too have struggled with edema but I have been able to normalize my legs using daily pressure stockings. I suggest that you look into this aspect. I will be adding a link to my page to yours if that’s okay. Please email me if you have any concerns or questions. Thank you very much, yours, Bill Tillier.

At present, we have just over 200 members. You are welcome to join our community and post links to your blogs whenever you choose. The site is run entirely by volunteers, some of whom are myositis patients, and its mission is to provide myositis patients with a safe place to get information and support.

Dear Mike,
My name is David Bazan. I am 67 years old and I too have IBM. I am a retired U.S. Probation Officer and my symptoms started pretty much like yours, unable to get up from a seated position without using my arms, falling, difficulty climbing stairs, etc.

I completed reading your book today and had to thank you for sharing your story. I admire your tenacity in going forward with life. Everyday is challenging for me. I also have rheumatoid arthritis, osteoporosis, diabetes, & low T. Where I live few doctors have ever heard of inclusion body myositis. I do see one who does. He checks my C K levels quarterly.

I use a Quantum wheelchair which lifts me and I can get off the chair standing. Until recently I had been able to walk with a cane, but now I have to use a walker with platforms & tennis balls on the rear legs. I am 6’2, weigh 254 lbs. I had been able to get off my raised toilet without any problem; now I have a bariatric portable toilet bench over the toilet. From the floor to the seat it is 31″. I can get up much easier. I no longer drive and until recently relied on my wife to drive me to doctor visits. We have a pickup truck with an ambulance lift where the tailgate used to be. At present I am unable to get into the front passenger seat without help. So I have been using an ambulance transport that takes me to doctor visits and back to our house for a charge of $60 round trip. I feel safe doing this at present.

I can relate too your hospital experience as I was hospitalized in January for a month. The toilet in my bathroom was too low so I had to buy the present toilet/bench I currently use at home. I was unable to get up on my own and I had to use a Hoyer lift to get me onto the toilet. I had daily physical therapy to help me get me standing and walking.

I was pretty active when I was younger. My wife & I took groups on religious pilgrimages during the summer months. We fortunate to travel to Europe, Eastern Europe, and the Holy Land. There is no way I could attempt doing a trip like that again. Just going to the Mayo Clinic in Scottsdale, AZ took me 3 months to recover.

My hands always have inflammation and weakness. I give up opening jars with lids, medicine bottles which one needs to push down and turn to get the lid off. I once enjoyed shooting my pistol, going to pistol matches and sometimes winning trophies. Now I can’t pull the trigger much less lift the pistol. I gave it to one of my sons. I also loved photography. Now I can’t lift the cameras I have, nor hold the saxophone I’ve played since 8th grade through college.

My wife Carmen, of 43 years of marriage has been great. We have been inseparable and now has central nervous system lupus and rheumatoid arthritis. We still owe on our home and it was built in the 70’s…small bathrooms, bedrooms (3), and hallways. We have a swimming pool which I used to use frequently. Now I have trouble getting out and I am certainly not going to pay for a pool lift which for us would be a luxury.

Unfortunately there are no IBM support groups down here. I don’t even know if there are any other persons in this area with IBM.

In closing, thank you very much for sharing your story. Please accept my condolences on the loss of your wife. She was a very special person in your life and I am sure that a day does not go by that you do not think of her. May God continue to bless you Mike.

Mike-
Just wanted to say as an IBM sufferer I empathize with your story. I am still ambulatory but everyday I find activities getting more and more difficult. I just wanted to say that I feel for your loss of your wife and life partner. Thank God my wife is in good health as my care giver. I know what my future holds after living with this for 22 years and reading your and others stories as we all journey with this dastardly disease. I lost my brother in November who also had IBM. Keep up the good work you are doing and —- keep writing! Thanks –

Hi Mike. came across your blog from a Facebook link. just tonight, hope your keeping Well, I’ve been looking / Googleing for information on Myositis or what ever it is.. Been in Chronic joint pain a long time and red skin muscle twitching etc etc i feel like my body’s not been my own for a long time. Thank you for posting your experience’s with IBM. Doctors think i have DM After lots of tests and a Emg, just waiting for a Muscle Biopsy now hopefully Doctors can try and give me correct treatment then. lots to read here with your experiences of IBM. Regards Chris.

Hi Mike,
I was sad to learn your living circumstances changed; I hope that your new home is a good one for you. I just want to wish you well and express my admiration and appreciation for your very valuable contributions to all whose lives you have touched. I don’t know if you know the Jackson Browne song “For a Dancer” but it kind of speaks to the impact each of us have, most of which we don’t even know about. Check it out if you can. Carry on!
Warmly,
Mary Ann Neumann

My name is Tina Pinsonneault and I am a writer with DM2. I have been meaning to write to you, but I don’t know if I ever got to it. So, if you find this email a bit redundant, please accept my apologies. My mind isn’t the same these days.

I remember that I did write a review your book on Amazon and I loved it. Though I never intended to read it because I was only interested in your wife’s illness, your personality came through in your writing and drew me right in. I would have missed a truly wonderful book had I put it down after reading about your wife, so I’m sure glad I read it through. You are a gifted person and your book is beautifully executed. I thank you for writing it because I got a lot out of the information you provided. I am hoping to do the same for patients of DM2, so if I ever get it finished and published, I promise you a free copy. My only hope (besides finishing it), is that it turns out at least half as good as yours:)